Autism and Mental Health

In recent years, Autism Awareness Week has evolved into Autism Acceptance Week. We’ve been following this trend with interest. So we decided, as an experiment, to run an open meeting on the subject of autism and mental health. We were surprised by the uptake and on Friday 1st April, a large group gathered on Zoom for an informal chat.

We had a mixture of experienced autism advocates, professionals, and people just curious to learn more. Many of the group were exploring autism in later life as a possible factor in their mental health challenges. A common thread was adults learning they themselves may be autistic whilst supporting their children through an autism assessment.

Our group was wonderful to witness; chatty, engaged, with a lot of laughter. Jokes in the chat included the need for a “World Neurotypical Acceptance Week!” People supported one another to understand the terminology and were so generous in sharing resources. It’s amazing what can happen when you let experts by experience lead the conversation.

“Absolutely brilliant, lovely bunch to spend Friday morning with”

“This has been incredibly helpful”

Despite the goodwill and connection, we couldn’t ignore some of the stark realities for autistic adults. The group raised that health outcomes for autistic adults are poorer. Challenges include self-advocacy, self-care, and interoception differences (understanding your body’s own signals.) Executive functioning challenges can also make managing appointments and treatments more difficult. Autistic adults are far less likely to be in employment, leading to economic difficulties, isolation, and poor self-esteem. Studies also show that the autistic population are over-represented in suicide statistics, women especially so. However a binary approach to gender is problematic. There’s a curious correlation emerging between autism, sexuality, and gender identity; a focus area for the recent Connected by Autism conference.

Em Flint, our host, shared two recent pieces of research on underdiagnosis of autism. Swedish researchers who screened and assessed adults referred to psychiatric outpatient clinics concluded that 18.9% were autistic, with a further 5% having sub-threshold symptoms (see their January 2022 paper). Here in the UK, the excellent work of Dr Sarah Cassidy’s team at the University of Nottingham on autistic suicidality is sobering. A report published in February 2022 found that a significant number of people who died by suicide were likely autistic, but undiagnosed. Anecdotes in the room supported this gap in diagnosis. Just in our single hour together, the group shared stories of people diagnosed with personality disorders without autism being considered, or treated for eating disorders when in fact a sensory difficulty with food texture was at fault.

We took a moment’s silence together to recognise autistic adults who did not get the support they needed in time.

It’s clear that earlier diagnosis and support are essential to allow autistic people to thrive, and society to benefit from their contributions. As awareness and demand rises we are passing through a time when services and individuals are overwhelmed. What can we do to protect autistic mental health in the meantime?

Our elevenses group was full of hope and goodwill for change. Em shared a piece she once wrote with ten recovery-focussed strategies she uses to help her manage her mental health.

Recovery for her means being both realistic about the challenges of this lifelong condition, and optimistic about what’s possible.

The group agreed that trialling a survey to collect more opinions would be useful, and suggested some questions. We’d love to hear your views and see what we can do to take them forward.

Thank you to Duncan Casburn of PDA Dad, Katherine Last of Autistic on Wheels, Devon Partnership trust’s DAANA ,and Dimensions for Autism for attending and showing your support.

Huge gratitude to everyone who joined in, shared their story, and helped us decide which questions to ask in our survey.

We don’t claim to have all the answers – but we do see you and your struggle – and will campaign for greater hope, choice, and opportunity.

“I’m a huge fan… a wonderful and accessible way of talking about mental health and neurodivergence.”

Group participant

Devon Community Foundation’s Insights team recently published a round-up of autism support in the county. You can find it here: https://devoncf.com/blog/making-connections/